New data from almost 40 states reveal progress and gaps in connection, choice, and community life
CAMBRIDGE, MA, UNITED STATES, June 17, 2026 /EINPresswire.com/ — The National Core Indicators® (NCI) announces the release of the 2024-2025 National Core Indicators Intellectual and Developmental Disability (NCI-IDD) – In-Person Survey (IPS) National Report. This comprehensive report, a collaboration between Human Services Research Institute (HSRI) and National Association of State Directors of Developmental Disabilities Services (NASDDDS), offers the most comprehensive and generalizable data on the characteristics and outcomes of people with IDD who use state-funded services. Collected by 38 states and the District of Columbia from more than 30,000 adults receiving long-term services and supports (LTSS) through their state Developmental Disabilities (DD) service systems, the report provides a crucial overview of demographics and self-reported outcomes among LTSS users in the United States. For nearly 30 years, NCI-IDD has driven positive change in human service systems by using valid and reliable tools to collect, analyze, report, and disseminate these outcomes.
The survey participants come from diverse backgrounds, encompassing race, ethnicity, age, communication preferences, residence types, urbanicity, and more. The report gathers insights on the experiences of those using state DD system supports in critical life areas such as employment, choice and control, relationships, self-direction, health, and other important aspects.
State systems can use these data to examine the quality of their services, measure their performance, and understand the return on investment in human services and Medicaid-supported long-term services and supports.
Measures from this year’s report will be included in the CMS HCBS Quality Measure Set, for which reporting is required for states receiving Money Follows The Person (MFP). For more information, see here.
Here are a few key takeaways:
• Community inclusion and belonging: 71% of people said they get to go out and do things they like to do in the community as much as they want, and 29% take part in groups, organizations, or communities—similar data to previous survey cycles.
• Relationships: Across the sample, 13% of respondents say they often feel lonely, and 57% say they want help with making or keeping in contact with friends. Altogether, 36% of people want to be part of more groups in the community.
• Workforce: 40% of people say their staff change (turnover) too often.
The report highlights substantial variation in outcomes across states and within states across settings and population groups.
In a joint statement, Dorothy Hiersteiner, NCI co-director for HSRI, and Laura Vegas, NCI co-director for NASDDDS, said: “By centering the perspectives of people with intellectual and developmental disabilities, the NCI-IDD IPS helps drive meaningful improvements across human service systems. HSRI and NASDDDS will continue working with our state partners to turn these insights into data-driven strategies that strengthen Medicaid-funded services for the people who rely on them.”
To access the full National Core Indicators – Intellectual and Developmental Disability – In-Person Survey National Report 2024-2025, please visit the NCI website at https://idd.nationalcoreindicators.org/survey-reports-insights/. Click on the “Chapters 2024-25” dropdown to retrieve the report.
For a comprehensive overview of the results of the National Core Indicators – Intellectual and Developmental Disability – In-Person Survey National Report 2024-2025, please see our “At-a-Glance” infographic.
About National Core Indicators – Intellectual and Developmental Disability – In-Person Survey National Report 2024-2025
NCI-IDD is a collaborative initiative involving state DD systems, Human Services Research Institute (HSRI), the National Association of State Directors of Developmental Disabilities Services (NASDDDS), and people with disabilities and their families. As a research and quality-monitoring enterprise, the NCI-IDD IPS gathers data directly from individuals using state DD system supports and from their families.
Questions or comments?
We are always interested in collaborating closely with people with lived experience with intellectual and developmental disabilities. If you’d like to help us improve our research, please contact us at nci@nationalcoreindicators.org or visit our website: https://idd.nationalcoreindicators.org/.
Lauren K. Terry
Human Services Research Institute
+1 857-225-2836
email us here
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